PBC/AIH or not?

Hi, I'm new here. I was diagnosed with PBC a couple of months ago and have been on urso since, it does seem to be helping with the fatigue so far. After seeing a consultant he said I should have a biopsy which I have now had and am awaiting the results. I asked him why I needed a biopsy and he said he suspects AIH as well. I am confused as to why he would think this when my ANA result was negative. Does anyone know what else might indicate AIH? This site has been a great comfort in these early days, thanks to all.

3 Replies

  • Hi. I was originally diagnosed with PBC and AIH cross over. I think if was after the biopsy that they decided I didn't have AIH and it was a re diagnoses of PBC only!!!!! So maybe the biopsy is for clarification. I also have a few other autoimmune conditions. Good luck and hope all goes well

  • Hello Godfrey1.

    With urso I would say you have to be taking it for some time before you see really good improvements in yourself if you are experiencing any symptons at diagnosis.

    Back in early 2010 I started itching and I was fatigued at the time. I didn't think much of the fatigue due to my working schedule in a rather demanding job that I seemed to take home with me. It was the itching that caused me to seek a doctor's opinion and I then went on the path to PBC, diagnosed Dec 2010. I started on urso and then got a few temporary side-effects from it (heartburn, bit of tummy bloating and constipation), these vanished within a few months. The itch persists but I made life style changes from later 2010 and at some point during 2011 my fatigue vanished. I still get tired later in the day due to itching at night and if a night of unbroken sleep I certainly do start to feel it during the daytime.

    Urso for me has altered the itch somewhat, it isn't as prevalent as it was originally and I really only suffer from that later at night, it has usually gone by 5a.m.

    I think with urso as the bloods starts to improve (mine did within 2mths of starting urso) then your body cannot start to try to heal itself. This does take more time and my advice would be to persevere and keep going and with improved LFTs it will give you that boost, did for me.

    I am not sure what antibodies one would be positive for with AIH. I know if a doctor in the UK has any doubt as to a diagnosis of anything liver-related there is usually a biopsy requested. I didn't have a biopsy due to the 2 symptons I presented with, abnormal LFTs and the AMA test I had proved positively 'high titre'. I had a negative ANA at the time. I just have PBC. I only take urso.

    One thing to note is that if you are not in the UK and in America for instance, it seems a positive regarding a biopsy as the doctors there like to do what is known as staging of PBC if you have been diagnosed via the AMAs already. I personally do not go in for all this staging and have no desire to know either.

    Hope you get your answers as I believe there is also additional treatment for what is known as AIH/PBC, a crossover I have seen mentioned on tis site.

  • Thank you both for replying. I am in the UK and have had raised lft's since 2004. I finally went to my GP in April with pain under my right rib, which had also been happening for some time. After 3 visits and lots of blood work I was informed that together with the lft's and having positive AMA I have pbc. From there I had a scan and the saw a gastro who didn't really know much about pbc but wanted a biopsy. I haven't had the results yet but after he mentioned steroids I assumed it was aih he was looking for, maybe not! My ANA was negative so I was just wondering if it's the same as pbc and a negative can still mean I have aih as well. Sorry to be so long winded! Peridot, you are right, I spoke to soon. Thought the urso was making a difference to the fatigue but I hit that awful wall again yesterday and have been exhausted once again. I spoke to soon I guess! Keep well everyone.

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